MY POTS STORY | Postural Orthostatic Tachycardia Syndrome || Dysautonomia

Today I wanted to share with you my POTS (Postural Orthostatic Tachycardia Syndrome) story. POTS is a form of Dysautonomia that causes blood pooling in the feet. It causes dizziness, fainting, heart palpitations, fatigue, muscle pain and aches, migraines, GI issues and stomach pain, as well as other symptoms all over the body. This is my story.

*Some links are affiliate (meaning I make a small commission on sales). I would be so grateful if you decide to purchase anything to use these links to help support my channel. I only share things I truly love and think you'd love. :) *

For more info on my chronic illnesses check out the links below!

[EricaDiebold]

Thank you for your story. I suffer with POTS and heart disease. Funny enough, pots was the easier diagnosis to get, but I kept searching because it didn’t seem like enough and ended up get open heart surgery! Crazy world we live in! I’m glad to have YouTube so we can share our stores!

[stupidhoe]

Thank you so much for your story. I’m in highschool and I struggle with the symptoms of pots and Eds. I came close to losing all my credits because of all my sick days and I began to regard myself as lazy and just simply depressed and that the pain and fatigue wasn’t as bad as I perceived it. I love to hear that there are people that share this experience.

[kenadyforrest]

you are an answer to many many prayers in my life. i’ve been suffering from pots and i get married in november. i want to be able to be a great wife and work and do what i want to do but it’s SO hard. im going to spend the next few days binge watching all of your videos so i can get some help.

[mirandaseyler]

your story reminds me so much of my own! I have raynauds, POTS, syncopal seizures, PCOS, Chronic migraines, and fibromyalgia. when I pass out from the POTS I flatline so I ended up needing a pacemaker but I'm so glad the compression socks help you!.I struggle day to day and get exhausted just from talking but your story gives me a little hope that things can get better or at least easier to cope with. It took me a long time as well to get a diagnosis and was wrongly diagnosed a bunch of times over a period of about 10 years.Its an awful process but we all get through it somehow.hope you are doing well & staying safe ❤

[rachealjohnson]

3 years ago this November 2021, i was "healthy" other than epilepsy and AMPS/CRPS, and one night at 1.30 am, i thought i was having a heart attack! My bf at the time put his apple watch on, and my HR was at 😮😮😮😮 i got diagnosed with pots in the emergency room as my ER doctor's wife has pots. Yet im still to get a "formal" diagnosis all because i have CPTSD and generalised anxiety disorder.

Finally now in march of 2024, im FINALLY seeing a cardiologist for a formal diagnosis because after 3 years, i found a dr who believed me 😭❤️

[sharongenco]

Girl, you literally just made me laugh and cry. Thanks so much for your story! I hope you’re doing well.

[xochilguevara]

Ugh! I hate that stage of not knowing - can’t figure it out - start to think you’re crazy. Uuuhhh it’s the worst. And the most necessary time to support someone through once you’ve been through it yourself.

[Rachel-smfk]

THE SMALL VEINS & “I don’t miss” was actually my life when conventional medicine was trying to figure things out for months.. feel you.:(

[ilovepdub]

hi everyone. Stay strong. ur stories are amazing and you guys are strong. i dont have pots, im here because my friend have pots and i had never heard of it so i came to see what it was. Im so proud of yalls strenght

[monamorgan]

I am living with Fybro/ Chronic Fatigue daily and it is truly debilitating. I can’t imagine having P.O.T.S too. Thank you for being a good example of living with a chronic illness😁👍🏻

[MC-]

Your story is so similar to mine. One day may body just “shot down”, I have dysautonomia, POTS, EDS, chronic fatigue, IBS. It was triggered when I was 42. Never will know how. You are so young and have loving support. You’re going to be great! ( And it does get better 😉, I’m 46 now) the part that hasn’t gotten better AT ALL, is people telling me “it’s just in my head”, “get over it”, “be more positive “… I wouldn’t want them to feel what is is for me… but I don’t think the day they will believe in this is coming any soon. 🙏🏻

[russdadog]

I had same thing with g.i issues bloating, indigestion, climbing stairs was almost impossible with breathing issue's, hot showers made me feel faint and anxious dizzy, fast heart rate after eating, slow heart rate because i was put on beta blocker metoprolol, fatigue, palpitations all the time !! ..i went to my cardiologist and he couldn't figure out what was wrong with me so i left him found a new cardiologist and new cardiologist thinks i have pots he said older generations of cardiologists are
Clueless about pots . i feel better when laying down but not all the time, i also have a small sliding hiatal hernia that i think might be causing some of my palpitations. It's literally been a nightmare thanks for your story 🙂

[Brit]

Just got diagnosed 2 days ago and I just want to learn how to be okay… but hearing this makes me feel like I’m not alone

[SingleMomBudgeting]

I also have fibromyalgia - that was my 1st diagnosis about 12 years ago. To me, fibro sounds like a term they use to just give the symptoms a name - like colic for a baby...no reason why they cry, but here’s a name for it.

2019 I was real sick and had to call out of work, which I very rarely do. After that, the fatigue and exhaustion, along with brain fog and other symptoms, took a big hit! My doctor kept saying it was just anxiety - I have GAD I KNOW what anxiety feels like and that wasn’t it! I made an appointment with a local cardiologist myself, and that’s when I got my POTS diagnosis! It felt so relieving to finally have some kind of answer, I nearly cried in her office!

Thank you for sharing your story!

[aaniahareed]

you are really a role model for people like me who are suffering from autoimmune disease

[heathertowe]

I never pass out either, I go into the shakes and then seizures. Thank you for sharing your story. I had bulging discs, pinched nerves, peripheral neuropathy, and Celiac disease, so I was already seeing my general Dr, a physical therapist, and a neurologist when the presyncope and the seizures started, at this point he had already take ct scan, x rays, MRI, blood work and 2 EMGs. I wound up in the hospital after having a seizure my legs wouldn't work to hold up my body, so from that point in the hospital it took 6 months to find POTS after he tested me for every autoimmune under the sun, then he did EEG, more mri, more blood work, EKG. Finally I thought he was just frustrated and over it and was giving me busy work when he told me to go home and take my vitals for 30 days in the am and pm take down numbers laying, down, sitting up and standing up. So basically an at home tilt table test. When I went back after the 30 days, he took all of 2 minutes looking at numbers and he said you have POTS. Evidently my HR and sometimes BP will go up by 40 points with each position, BP sometimes just goes up by 20 not 40 but the HR is the main thing they look at . That's not my full long story, just a condensed version, jt I think its neat and interstate to hear other people's chronic illness stories.

[kimbystone]

Aimee, I've been watching your channel a lot recently. Thank you for the reminder of Dysautonomia international and for your recommendation on the Dysautonomia Project book. I've been doing as much research as I can. So glad you figured out your diagnosis, and thank you for sharing ☺️ what a great husband, learning to serve his new wife in that hard season!

[amara]

You sharing your story is so powerful! I have POTS and just like you I felt better lying down but I never connected the position my body was in to my symptoms. Including freezing feet, headaches, dizziness, etc. In hindsight it makes so much sense!

Now my doctor has me on a strict max 10 min standing, max 20 min sitting and then lying down. It's helping some but I'm excited to try other things like possibly IVs or stockings.

[JCoDreams]

Wow, thank you. Your story is so relatable. I should wear my compression socks more often! I find sitting in the bath with Epsom salt is so much more tolerable than a shower!

[zacharywickham]

I have orthostatic hypotention which i found out after a year and a half of hell being in and out of the doctors office.

This started out of nowhere for me after getting covid and hasn't stopped since.

I got the diagnosis from a tilt table test/ treadmill stress test. If you feel like you're going to faint when you go from laying to standing or when you're working out or being outside in warm weather ask your doctor for these tests!

What helps me: compression socks up to my knees, drinking a gallon of water a day, eating enough salt to be able to hold that water, never work out without eating or drinking water first.

I was also given medicine that raises my blood pressure but i only take this when i know for sure im going to faint if i dont take it.

Hope this helps someone.